Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Iga, Test Reults And Junk

KMMO320

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

I finally got my copies of my results from the GI. I read the biopsy report she wrote and it sounds like she went in specifically looking for ulcers. She wrote that i went in for abdominal pain..which I did NOT! I specifically told her I was there because of my nutrient/vitamin deficiencies and other head stuff that I felt was food related. I had chronic D which CAUSED abdominal cramping, but the cramping only lasted as long as the D..and then went away. I was way more concerned with the migraines, foggy head, sinus pain, etc..

She said she took biopsies of the duodenal bulb. but dont they usually go a little further down? She said the descending duodenum "appeared" to be normal and biopsies were not necessary.

Then I got my genetic testing and it said I was DQ2-, DQ8- which was Extremely Low Risk..

Then the rest of my blood work..it said Celiac unlikely if IgA level is Sufficient. So she CIRCLED where it said UNLIKELY..but Guess what? I AM IgA DEFICIENT!! And I told her that and the bloodwork says that.

my total IgA is 6.7 and the norm is 44-441.

SO..I made an appointment with the Celiac Center at Beth Israel Hosp here in Boston. If nothing else, I will have peace of mind, and if it really IS NOT Celiac then it must be an intolerance and I will just know. I go July 16th, was surprised I got in so fast.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


roxieb73 Contributor
roxieb73
Posted

DO NOT EVER GO BACK TO THAT DOCTOR!!! OMG what a quack! Ok sorry but what you have written makes me soo mad! You have the 2 classic DQ2 and DQ8? Those ARE the celiac genes! How is that low risk? Plus IGA deficient? You need to see a new doctor ASAP. I am glad you have an appt somewhere where they know what they are doing. BIG BIG Hugs!

KMMO320 Contributor
KMMO320
Posted
  • Author

DO NOT EVER GO BACK TO THAT DOCTOR!!! OMG what a quack! Ok sorry but what you have written makes me soo mad! You have the 2 classic DQ2 and DQ8? Those ARE the celiac genes! How is that low risk? Plus IGA deficient? You need to see a new doctor ASAP. I am glad you have an appt somewhere where they know what they are doing. BIG BIG Hugs!

no no..DQ2- and DQ8-..the minus signs are for negative...its from the Prometheus labs...

At the very least, I feel I have an intolerance and I just want to know that I am not imagining things. but I am IgA deficient and I feel that that means something. I am also mad the original GI for not even TRYING to help me find out WHY I am so sick, rather than tell me what is NOT causing it. know what I mean? She hands me some prilosec and says, see me in 3 months.

She tells me:

-my Vitamin D is DANGEROUSLY low..and hands me some supplements

-I have several ulcers and acid reflux, here are some pills

-Iron is VERY LOW..take some vitamins

-B12 is "ok" maybe take some supplements

-IgA is defficient

-I have "IBS"

-I have hypothyroidism...take your pills

OK BUT WHAT IS CAUSING ALL THIS??????????

roxieb73 Contributor
roxieb73
Posted

no no..DQ2- and DQ8-..the minus signs are for negative...its from the Prometheus labs...

At the very least, I feel I have an intolerance and I just want to know that I am not imagining things. but I am IgA deficient and I feel that that means something. I am also mad the original GI for not even TRYING to help me find out WHY I am so sick, rather than tell me what is NOT causing it. know what I mean? She hands me some prilosec and says, see me in 3 months.

She tells me:

-my Vitamin D is DANGEROUSLY low..and hands me some supplements

-I have several ulcers and acid reflux, here are some pills

-Iron is VERY LOW..take some vitamins

-B12 is "ok" maybe take some supplements

-IgA is defficient

-I have "IBS"

-I have hypothyroidism...take your pills

OK BUT WHAT IS CAUSING ALL THIS??????????

Ok I misunderstood. Can you get copies of your labs to see what they say? I would be interested to know what genes you do have. There are other genes that cause Gluten intolerance. I am double DQ1 and have most of the symptoms you talk about. Including the dangerously low vitamin d. Hopefully this new place will be able to help you figure it all out.

KMMO320 Contributor
KMMO320
Posted
  • Author

Yep...my DQ Genotype says:

DQ2-, DQ8- (with the negative signs after them) and next to that it says Risk: Extremely LOW.

I just love the part though, that SAYS right on the serology report that the test is invalid if IgA is not sufficient and she CIRCLED where it says "Celiac Unlikely"

Doesnt the fact that its tells you its not valid tell you something??

I just want a Dr to at least try everything..dont do it half way...what is the other blood test that they should do if someone is IgA deficient? I am trying to look to see if I had that done....

Also, with the biopsy..to me, it doesnt sound like she went very far in my small intestine..it sounds like she saw the ulcers...and said AHA! theres the problem!

Skylark Collaborator
Skylark
Posted

You are in a difficult position. The current two tests usually used used are TTG IgG and deamidated gliadin IgG. Some doctors also order anti-endomysial IgG (called EMA sometimes), which is an older version of TTG but not all labs run it. You may get some resistance, particularly from this ignorant-sounding doctor because many doctors don't realize that you can be celiac with a negative genetic test.

I think it's more likely that you are non-celiac gluten intolerant. Low IgA is a risk factor for celiac but the risk of celiac without the genes is fairly low compared to the risk of gluten intolerance. Gluten intolerance and the resulting inflammation can cause all the problems you've listed including the thyroid trouble.

So, once you've got your IgG tests, give the diet a good strict try.

squirmingitch Veteran
squirmingitch
Posted

Wait a minute. The op said in the dh forum that she had the rash with blisters just like the photos she saw of mine. I think she's celiac.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

So the gene tests say what you are NOT but fail to say what genes you DO have. Right?

And I'm copying & pasting here from another thread:

https://www.celiac.com/forums/topic/93450-please-help-me-interpret-my-4-yr-olds-celiac-panel-results/page__pid__802152#entry802152

This information is straight out of the book "Living Gluten-Free for Dummies" by Danna Korn. In this section, she talks about blood work and biopsy tests and how to read the results:<br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">"tTG (anti-tissue transglutaminase)-IgA: This test is very specific to celiac disease, meaning that if you have a positive tTG, it

KMMO320 Contributor
KMMO320
Posted
  • Author

This is the labs from Prometheus:

Reference

Deamidated Gliadin Peptide Antibody IgG (DGP IgG) <0.4 EU/ml <4.9 EU/ml

Deamidated Gliadin Peptide Antibody IgA (DGP IgA) <0.1 EU/ml <6.1EU/ml

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml <10.3 U/ml

Anti-Endomysial IFA (EMA IgA) Negative

So, I am likely Intolerant and not Celiac, which is great. I am now wondering if I should bother seeing another Dr at all since I am likely not Celiac. I just dont know what to do. I dont want to go there and look stupid..like, the dr saying..hey you had all this work done you DONT HAVE CELIAC why are you here wasting my time?

Ugh. I just know something isnt right, you know?

Skylark Collaborator
Skylark
Posted

As Squirmingitch said, if you get a blistered, very itchy rash you may have dermatitis herpetiformis. The rash is autoimmune and if that's the case you DO have celiac. I don't know how the skin biopsy is done in someone with selective IgA deficiency but someone in the DH part of the forum might. Other than that, really all that's left as far as bloodwork is IgG TTG. It might be good to see if your Dr. will order it while you're still eating gluten, mostly so you don't keep wondering.

KMMO320 Contributor
KMMO320
Posted
  • Author

As Squirmingitch said, if you get a blistered, very itchy rash you may have dermatitis herpetiformis. The rash is autoimmune and if that's the case you DO have celiac. I don't know how the skin biopsy is done in someone with selective IgA deficiency but someone in the DH part of the forum might. Other than that, really all that's left as far as bloodwork is IgG TTG. It might be good to see if your Dr. will order it while you're still eating gluten, mostly so you don't keep wondering.

There is something here that says IgA TTG..

Anti Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Norm <10.3 U/ml)

If thats it and its negative I would be happy to cancel my appt and just eat gluten-free on my own and know that im not celiac , and am intolerant.

I am tired of doctors, to be honest

Skylark Collaborator
Skylark
Posted

There is something here that says IgA TTG..

Anti Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Norm <10.3 U/ml)

If thats it and its negative I would be happy to cancel my appt and just eat gluten-free on my own and know that im not celiac , and am intolerant.

I am tired of doctors, to be honest

Because of your IgA deficiency, IgA tests will always come out negative. There isn't any IgA to look for.

The only useful test you've had is deamidated gliadin IgG. If your doctor is willing, I'm suggesting you get the IgG version of TTG, just to be sure everything is negative for your peace of mind. :)

squirmingitch Veteran
squirmingitch
Posted

Just a reminder to remain eating gluten until the test is done or you risk scotching it. And IMHO it might not be a bad idea to keep the appt. @ the celiac center if you really want a firm dx. They may decide to retest you & even do another endoscopy so keep eating gluten.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748
    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.